Tuesday, May 22, 2018

(I’ve been fighting the creeping cruds for the last couple of weeks and haven’t felt up to composing

a new essay. so, I’ll offer up a “Best of Wheelchair Kamikaze“. This composition generated a lot of response when it was first posted about two years ago, and I hope you find it worthwhile the second time around. Stay tuned for a new essay, coming just as soon as the cruds recede…)

Later in May I’ll be marking the 13th anniversary of my official diagnosis with Multiple Sclerosis. Believe you me, the date won’t be punctuated by any festivities, but more likely with a shake of the head. Thirteen official years with this motherfracker and the reality of it is still a shock despite my mounting disabilities and the indignities that go with them. At this point my healthy days are becoming a distant memory, so much so that many of the details of my way-back-when life have taken on a dreamlike quality, as if they are no more than the ethereal whisps of a somnolent mind.

But no, indeed there was a time when I was healthy, and yes, I did actually do all of those things that are stored in my memory banks. Thing is, looking at me now, due to the unfortunate developments of the last 13 years nobody could ever guess at the experiences that shaped me. This certainly wasn't true when I was well, when my outward appearance most definitely reflected many of my life's experiences, my likes and dislikes, and, I think, something of the essence of my soul. Though I wasn't a peacock, I did take pride in my appearance, and often wore a rotating selection of the antique wristwatches and jewelry (some of the jewelry dating back to ancient times) that I passionately collected. Yes, I'll admit to a touch of vanity, but mostly my outward appearance was simply a natural extension of the person within.

One of my favorite pastimes is people watching, and part of what makes that activity so endlessly fascinating is imagining the life of each person spied, constructing an off-the-cuff narrative of their past, present and future. Writ large on many folks is an imprint of their lives, of dreams and aspirations filled or failed, of triumphs exulted and disappointments suffered. That sly looking older gent, snap brimmed hat worn at just the right angle and eyes all a twinkle certainly had his adventures, quite likely including a few too impolite to be told in public. Was he CIA or Cosa Nostra, and is there really a difference? That fashionably retro young lady, trying so desperately to come off cooler than a Frigidaire, masking not so long ago awkward teenage years and a mass of present insecurities roiling inside, her wannabe Audrey Hepburn exterior a veneer for the Olive Oil heart pumping within.

Most of us project who we have been and who we want to be through the image of ourselves we construct for the outside world, some more consciously than others but almost all having their tells. Much to my chagrin, though, my current wheelchair bound, physically decrepit state serves as the ultimate unwanted camouflage. Spastic, atrophied limbs and my mechanical means of ambulation paint a picture likely to overwhelm any I might otherwise want to project. When I first got the chair and was less disabled I made it a point to try to be the most fashionable gimp possible, choosing clothes and accoutrement that screamed “personality”. Now, though, forced by the ravages of my illness to wear garments picked far more for practicality than self-expression, my outward appearance speaks primarily of my medical predicament and not of the life that preceded it.

It’s strange how invisible one can feel when sitting in a hulking 350-pound mechanical monster. The simple fact is that most healthy folks don’t spend much time contemplating the person and personality sitting in the wheelchair, preferring to devote their thoughts instead to less morbid topics. Thinking too hard about the person in the wheelchair might provoke some rather unpleasant truths, including the disturbing reality that with a single stroke of bad luck that person in the wheelchair could be them. It’s much easier and less troubling to simply assume that the wheelchair people had just been born that way, or had in some other fashion materialized in their present state fully formed, like a pod person from The Invasion of the Body Snatchers.

Well, for the record, I’d like to state that I was definitely not born this way. This summer it will be eight years since I was forced into my first wheelchair, and about 11 years since I exhibited my first blatantly obvious outward signs of disability. The life I led before MS intruded upon it was varied and colorful, filled with experiences ranging from the ridiculous to the transcendent. And some that were transcendentally ridiculous.

At age 17 I worked for a dirty magazine, at 23 I was the lead singer of a punk rock band, at 30 a creative cog in a large buttoned down multinational corporation (yuck), and at 36 found myself heading up the DVD production department at one of the foremost music/TV/video production facilities in the world.

I played an important part in the making of over 300 mostly music related DVDs, and have a platinum record on my wall and a listing on IMDb.com to prove it. And even though that all sounds interesting in the telling, I never found much satisfaction in my work life.

I was a habitual night crawler, carousing past dawn more times than I can remember or count. To this day I’m rarely in bed before 3 AM, and strive to be blissfully ignorant that there are two 10 o’clocks in one day.

I suffered several broken hearts, but also broke a few along the way (sorry for that). I learned that although the faces and circumstances of each heartbreak differ, the heart tends to shatter along the same fault lines every time. And that after each heartbreak, which I neurotically nurtured, I was only as alone as I wanted to be. New romances magically appeared just as soon as I opened myself up to their possibility and stopped pining for loves lost.

I was almost murdered (twice), suffered a detached retina after hitting a really big guy in the fist with my eye, and once unceremoniously projectile vomited at my boss’s table during a raucous office Christmas party. Oops.

I drove fast cars way too fast (how else to drive them?), bet on fast horses that mostly turned out to be not quite fast enough, and fasted on Yom Kippur.

I shot video professionally while flying in vintage war planes, police helicopters, hot-air balloons, and even the Goodyear blimp, twice.

I jumped out of an airplane.

I came face-to-face with a 10 foot bull shark while snorkeling over a reef a few miles out in the Atlantic off the Florida Keys. I wish I could say that I faced the moment with steely resolve, but in plain fact I tried my best to run back to the boat that brought me there, proving once and for all that I am not the son of God and cannot walk on water. This did nothing to ingratiate me to my then girlfriend, left behind in my panicked wake. Please see the note on heartbreaks, above.

I won the lottery (for thousands, not millions), shot a hole-in-one, and came in first in a 500 player online poker tournament.

For a while I swam a mile every day, slicing through the waters in a meditative state stoked by the womb like environment of the pool and the repetitive physicality of the exercise. How I miss that.

I made friends with some very special people, relationships that matured beyond mere friendship to become family. These precious folks are an integral part of who I am and how I view the world. And I owe most of them long overdue phone calls.

I married an angel.

At times I've been down to my last dime and at others have been flush with cash, and learned that what my grandmother used to tell me about wealth when I was a kid is true: rich or poor, it’s nice to have money.

I could go on, but I’m sure you get the gist. I realize, too, that my becoming disabled has afforded me some extraordinary experiences that I otherwise certainly would’ve missed, and not all of them involve unpleasant medical procedures. Through these pages I have touched and been touched by people from all over the world. My MS “get out of work free” card gave me a reprieve from the working world, and allowed me the freedom to dust off parts of myself that had been left neglected for decades. I’ve made some very special new friends who are in one form or another members of the MS club. I owe most of them phone calls, too.

Despite the fact that I am, of course, still the sum of all of these parts, as my disabilities mount they increasingly dictate the persona the public at large sees when I venture outside my apartment. It’s impossible for them not to, as my wheelchair has no invisibility button and my withered and weakened limbs can’t be camouflaged by even the most snappy pull over shirts and elastic waisted pants. I know I'm not alone in these feelings, as I sense some of the same frustrations in the knowing glances and nods exchanged with other wheelchair users that I pass on the streets of New York. Funny thing is that some of the most interesting people I’ve ever met are fellow wheelchair jockeys, most of them imbued with a quiet wisdom and sense of the absurd accrued by enduring the foibles of our shared tribulations.

Indeed, most of us in wheelchairs were not born this way, and if that fact makes some members of the healthy world uncomfortable, well, sorry for that but get over it. Although a quick look at me may no longer reveal the kernel of who I am and where I’ve been, I'd be happy to share the lessons learned and laughs picked up along the way with anybody who would care to hear them. I am much more than this faulty and misshapen body; there's still a person in here filled with all the simplicities, complexities and idiosyncratic contradictions I've collected all these years. To find out what lurks within requires but one magic word. Hello.

Writing this essay brought to mind a wonderful song written and recorded by John Prine in 1971 that touches on many of these same themes, though in the context of old age rather than disability. It’s one of the most poignant songs I’ve ever heard…

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...